The Lucky, Unlucky One: An Odyssey with Encephalitis

A Personal Perspective: The experience of autoimmune encephalitis.

Reviewed by Lybi Ma

By Laura Ryan

The lucky, unlucky one. That is what my mom always calls me. The chances of developing autoimmune encephalitis, inflammation of the brain caused by the immune system in error, were thought at the time to be roughly the same as winning the lotto—except I didn't win the lotto, and I certainly did not feel lucky. As more time passes since my battle with autoimmune encephalitis, I have started to realise what my mom really meant. Although I was most certainly unlucky having developed AE, I was also lucky.

I was lucky that my family never gave up on me and fought for me to receive the appropriate treatment, I was lucky I found a brilliant consultant who was able to diagnose me, I was lucky that I was not left with any residual damage; and most of all, I was lucky to have had a transformative life experience at such a young age. I didn't know it then, but AE ultimately changed the course of my life down the route of science, research, and healthcare as a deep passion and lifelong career.

AE is a difficult condition to diagnose at the best of times, but unfortunately for me, I had a seronegative form of autoimmune encephalitis, which meant there were no tests at the time that could confirm my diagnosis. Luckily, my consultant followed her gut instinct and proceeded with the recommended course of treatment despite no confirmed test result.

Unfortunately, due to my condition presenting mainly psychiatrically, I was misdiagnosed countless times with mental health conditions such as severe depression and schizophrenia. I finally received a diagnosis of AE in June 2016. Once I received this news, there was a huge sigh of relief for both me and my family. What I failed to realise at the time was that, although I had won that battle, I had yet to win the war. The next two years of my life would be spent picking up the pieces that were left of my life, relearning appropriate behaviours and responses to everyday situations, and rebuilding relationships lost during this time, including my relationship with myself.

During my recovery, I sought medical support from my consultant and her team in the hospital, psychiatrists, therapists, nutritionists, medical herbalists, and even a bioenergy healer. Whatever service was available, I was willing to try, and although I cannot say for certain whether all of these services were of benefit to me, I can say for certain that there was no harm in trying. Unfortunately, at the time the public psychiatric support available in Ireland was substandard and hence I was forced to seek out private services to help me through this difficult period which left my family paying astronomical fees for me to receive treatment. Fortunately, we had good health insurance at the time but that is not the case for everyone.

It’s hard to know what path exactly I would be on had it not been for developing AE but I imagine it vastly different. As a child, I had a passion for business, more specifically money. My parents always thought I would pursue a career in this field and so did I. If you had told 13-year-old Laura that she would be currently pursuing a career in healthcare and life sciences she would have never believed you. I had a phobia of needles, more specifically blood, and in addition to this, I can’t say I was ever drawn to the area of medicine or even curious about how the body works. However, whilst suffering from AE, I found myself wanting to understand what was happening to my body and how the different courses of treatments could change that.

Looking back I see how misdiagnosis from other physicians with mental illnesses has affected me. Once a label like that has been placed on you it is very hard to erase. If it weren’t for the persistence of my family, I would have ended up in a psychiatric unit unable to receive the correct care, still stuck down the rabbit hole forever. When my consultant suggested a physiological underlying cause, I wanted to understand everything.

I feel having been on the receiving end of almost every medical test known to man gives you a certain appreciation for not only the importance of this technology in diagnostics but also for the feelings one might experience during them. As Atticus Finch said in To Kill a Mockingbird, "You never really know a man until you stand in his shoes and walk around in them." I have been in those shoes and know what it feels like to be on the receiving end of endless medical tests. This is somewhat of a gift that I was blessed with, although I already possessed a great deal of empathy, I am now able to relate to patients on a level that most caregivers may be unable to comprehend.

I am now in my final year of human health and disease sciences at Trinity College Dublin, where I find myself pursuing a career in medicine. Although I previously would have thought it impossible to seek such a demanding career, I now have full confidence in myself knowing I have the strength, passion, and determination to fulfill a meaningful role within healthcare.